Survey on patient knowledge and manifestations of congenital aniridia
Congenital Aniridia Patient Questionnaire
This study is trying to see how much people with congenital aniridia and their families know about the condition and what symptoms they experience.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 100 (estimated) |
| Sex | All |
| Sponsor | Assistance Publique - Hôpitaux de Paris Academic / other |
| Locations | 1 site (Paris) |
| Trial ID | NCT05390801 on ClinicalTrials.gov |
What this trial studies
This observational study focuses on congenital aniridia, a genetic condition characterized by the absence of the iris and various eye and systemic manifestations. It aims to gather information through a survey designed by ophthalmologists at Hôpital Necker-Enfants Malades, assessing both the patients' understanding of their condition and the range of symptoms they experience. The survey will be completed once by eligible patients or their guardians, providing valuable insights into the disease's impact on quality of life and awareness.
Who should consider this trial
Good fit: Ideal candidates include patients aged 18 and older with congenital aniridia, or minors whose parents can complete the survey.
Not a fit: Patients with neurological disorders that prevent them from answering the survey may not benefit from this study.
Why it matters
Potential benefit: If successful, this study could enhance understanding of congenital aniridia and improve patient education and management strategies.
How similar studies have performed: While similar studies on patient knowledge and disease manifestations exist, this specific approach focusing on congenital aniridia is relatively novel.
Eligibility criteria
Show full inclusion / exclusion criteria
Inclusion Criteria: * Any patient ≥ 18 years old with congenital aniridia and able to respond independently to the study survey, * or patients under 18 years old with congenital aniridia, whose parents can answer the study survey, * adult patients or holders of parental authority and minor patients informed and not opposed to participation in the study. Exclusion Criteria: \- Patients with neurological disorders preventing them from answering the survey, except in the case of minor patients, if the parents can answer for the patient.
Where this trial is running
Paris
- Hôpital Necker-Enfants Malades — Paris, France (Recruiting)
Study contacts
- Principal investigator: Alejandra Daruich, MD, PhD — Assistance Publique - Hôpitaux de Paris
- Study coordinator: Alejandra Daruich, MD, PhD
- Email: alejandra.daruich-matet@aphp.fr
- Phone: 1 44 38 19 69
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.